Anyone with high masking girls with no school support and no hope of support from any outside establishment?

[lollydu]

My daughter is almost 6.

I have a late ADHD diagnosis.

We are at wits end with the situation. She has a violent temper, still dealing with hitting, biting, scratching, either us or she will bite or throw things she has to hand. Very low frustration tolerance and very emotionally volatile. Interrupts constantly, shouts over us and gets angry if anyone is talking to each other and not directly at her. Obsessive behaviours, has a special interest in dolls (we have tried introducing other toys but she doesn't play with anything else, for example even things like sylvanian families she will make the dolls play with them etc). Fixates on wanting things to the point where it affects her emotional wellbeing and won't drop it for days. Won't go to sleep at night, she is up for 3 hours, high anxiety, can't settle. Very anxious about going to school. Sensory issues, she is always putting things in her mouth, wears a chewy most of the time otherwise she chews her clothes and hair. Obsessed with dummies although we removed them from her around 2 years ago she still speaks of them and always says she wants them back and wishes the fairies would bring them back.

She's not displaying much of this obviously at school, the only thing they say they have noticed is the chewing but I don't think they are looking particularly closely as they have a large number of children with clear additional needs and have their hands very full. Academically I don't think she's behind, but I have noticed compared to her friends Christmas cards that have been sent to us this year that she could need some additional support in the future - she writes all her numbers backwards still and many of her letters and rarely includes spaces, her writing is quite illegible at times. She's still so little though so it's not something I'm worried about yet. She's fairly social and has friends, although her interest in other children was quite late in coming and she was adult led for a very long time.

I feel so alone and like every time I raise my concerns with the school I am dealt with as though I am an anxious parent looking for problems where there are none. I can see why people would think that, quite often when we are out and about visiting friends she comes across as social and happy. But our home life is quite intolerable at the moment. I have another child who is not like this at all and wasn't parented any differently so I don't think it is a parenting problem. Although we often feel very out of our depth with her and at a loss, we have always enforced boundaries and said no. Consequences and standard discipline do not seem to work where she's concerned.

I am thinking about taking her to see a private children's psychologist or something, not with a diagnosis in mind at this point as I doubt it would be an option where she's masking at school, but just to access some support for her as I am genuinely worried about her emotional wellbeing, I feel like we are getting it all wrong and doing her more damage trying to discipline her the standard way and having things escalate all the time. I feel like she just thinks she's a naughty girl and different which breaks my heart, but I don't know what to do when she behaves this way. I've read the explosive child and I relate totally but in practice it's very hard to do and my partner is not on the same page.

I guess I just want to talk to people in the same boat, where school is not going to be the route to help for her. Feel very lost with it all at the moment.

Thanks for listening xx

I think maybe you need someone to talk to and to reassure you. (Not because you are doing anything wrong but because you are finding the daughter you have is so different to the daughter you wanted and that isn’t a good place to be. She sounds absolutely adorable, and so much of the “being like other children” really really doesn’t matter.

DC who mask at school can still be diagnosed.

Appearing to cope at school and exploding at home is known as the coke bottle effect. It signifies there are unmet needs at school. If school life was easier, home life would improve too. There will be signs at school. The school is just not seeing them or not seeing them for what they are.

Request another meeting with the SENCO. They need to be providing more support. Speak to the GP about a referral for assessment. Not all areas commission sensory OT on the NHS, but if your ICB does, look at a referral for that too.

You can also request an EHCNA yourself. You do not need the school’s support for this. You may have to appeal, but you can get EHCPs for DC who mask at school.

Some people find the books The Explosive Child and the Out of Sync Child helpful. Some also find PDA strategies &/or Yvonne Newbold’s resources useful.

Do you have any sensory equipment at home? Keeping a diary may help you spot triggers.

I think you are right, I love her so much and she is a wonderfully sensitive, creative and thoughtful little girl who can be so loving and sweet, but it's like a Jekyll and Hyde situation where I often feel on the edge because I'm constantly trying to pre empt her meltdowns and avoid them. I fully accept her as she is, but where I come unstuck (and I think this is down to my own neurodiversity) is in catastrophising over her future and the damage we are doing by not having the right support in place for her and doing the right things for her. I feel very lost and unequipped to handle things.

Thank you - lots of acronyms and resources I need to look up, thank you for sharing the names of some helpful literature. I've read the explosive child and listen to his podcast and so much of it is relatable, we just massively struggle with plan b as it's always emergency plan b and often too late to get things back on track, plus my partner is resistant to it, he's a firm believer in consequences and standard discipline so loss of privileges and taking away toys etc, none of it works and usually makes things worse.

SENCO = Special Educational Needs Co-ordinator.
OT = occupational therapy
ICB = Integrated Care Board
EHCNA = Education, Health and Care Needs Assessment
EHCP = Education, Health and Care Plan
PDA = Pathological Demand Avoidance

A detailed diary to try to spot triggers can help you try to deescalate situations before DD reaches the point of no return. Deescalating once DC have reached that point can be harder. Much harder when DH isn’t on the same page. He needs to understand preserving with something that isn’t working won’t magically make it work.

Thank you for all your help with clarifying those :)

We've had an absolute shocker of a bedtime. It's so stressful because there's not one sleep training/bedtime technique that will work with her. She's just constantly calling out and it's a cycle of her telling us she can't sleep, things escalating to her getting out of bed constantly. I try to just lead her back to bed and say it's time to sleep but I'm talking it's just constant as soon as I put her back in bed she's out again and I'm basically standing at the top of the stairs for hours just putting her back to bed and she's swinging between laughing and saying she needs an activity to do because she's not tired to crying when my partner goes up and starts taking things away and being the hard disciplinarian. Then cuddles from me and trying to sort things out for her and settle her and the cycle starts again. We tried moshi kids sleep app tonight but that didn't work. Eventually she settled after the final upset from my partner after multiple getting out of bed and coming to the stairs and cuddle from me, but I just don't want it to be like this? I want to help her settle but nothing works, literally nothing! I'm hoping it's partly because of the Xmas holidays and things will settle when she's back at school and routine back to normal. Part of me thinks maybe she's genuinely just not tired and maybe we need to try putting her to bed at 9ish but since these problems have been happening her bedtimes slipped later and so has wake time so we are having to wake her for school still tired. I can't take the chance that we put her to bed at 9 and she still takes 3 hours to settle!

I just don't know what to do, what do you do when sleep training techniques like check ins etc don't work? I even said I would stay with her until she was asleep in desperation but she's just so stimulated she just talks and talks at me, it's the actual settling down for sleep she's so resistant to.

Have you thought about asking for a referral to look at melatonin? Most GPs won’t initiate treatment.

It didn’t work for us, but some people find a 2 way monitor helps.

There is one part of explosive child that can work even with unhelpful partner, and it's the driling down into what the problem actually is. Would it be possible to have a quiet chat tomorrow and say something like 'I noticed you had a hard time at bed time last night. You're not in trouble and I'm not angry. Can you tell me what's up?' Because otherwise it's you second guessing what the problem is and scrambling for answers

If you're on insta try following At Peace Parents and see if the info re PDA rings any bells for you. Really helped us clarify what was going on with our jekyll and hyde child.

All of this (including husband part) sounds like it could have been written by me.

We were having major issues with her at home but the school said that she was the perfect child. We knew it couldn't just be parenting as we had an older child who didn't have any of the problems she did.

Finally at age 12 the SENCO said she needed an Educational Psychologist report as they had seen some issues with her work (she ended up being diagnosed as having a Specific Learning Disorder in working memory and processing speed) and they also suggested we get her assessed for autism. Which, having the privilege of money, we did privately and yes she was (she is now 14 and basically refusing to engage with the fact she is autistic which is a problem in itself but at least we now know what is going on).

I wish I had listened to my gut when she was younger. So many tears, tantrums, screaming, days out ruined would have been avoided.

Please, please, if you have the funds get her assessed.

Similar to my own child ( although my daughter is not explosive/ angry or violent), she was obsessed with dummies, had separation anxiety and reversed her letters. No support from school or GP as she masks . My concerns started in year 1.

wghen she was 7 and in year 2 I spent £2,000 on a private assessment for ADHD and ASD - she has both. It was money well spent as I believe her ASD traits would not have been apparent until an older age. I moved her at year 3 into a small independent prep school and she is thriving there - the teachers have time for her. Had i not had an early diagnosis for her I believe she's have struggled on and been overlooked and fall even further behind - as she was never disruptive and there were children with more apparent needs she was simply ignored in the state system. Whilst private school isn't an option for every family it has been a great experience for us - her new school is very nurturing and supportive and a great fit for her. It was an easy transition at that age.

My advice is trust your instincts and don't expect any help from the state - pay for what you can yourself and don't expect any state support for your DD

So sorry OP that you're going through this, it sounds incredibly difficult!

I have a 7yo DD with suspected ASD/ADHD and whilst we have not seen the extremes of behaviour you mention, there have certainly been many many stressful days and evenings, so I can relate to a certain degree.

What stands out to me is that you and your partner appear to be responding to her in very different ways, and I think that needs looking at.
I think you're doing amazing being so gentle, thoughtful and responsive with her considering the circumstances, you honestly sound like you're trying so hard, but I do understand why your partner isn't able to be that way, as however much you love your child it can be really difficult if you're not a naturally calm person/get triggered easily by not feeling listened to etc to not get frustrated or angry.And what you're up against is alot for you all.
I think you both need some help to think about how you can 'meet in the middle' abit more so she isn't getting two extremes of parenting styles.
Writing some agreed tactics down before may be useful .....eg: when she does X we will respond with Y.
Would just give some consistency.
Maybe look at a specialist SEN parenting course if one runs in your area?
I totally get the books are hard to recall in desperate times.
Also, look carefully at triggers for your child's behaviours....if you can avoid those so that things don't escalate too much, that is key.

I think your idea of seeing a psychologist is a good one.And look at getting a private ASD/ADHD assessment.Because even if school were on board for an NHS referral it takes a LONG time....DD was referred in reception in spring 2022.We are still waiting for a diagnosis now, so it's been nearly 3 years.

It must be so frustrating when school aren't seeing what you do.I am lucky that my DDs school have always seen elements of ASD/ADHD behaviours in her and have backed us up with referrals etc, but i work with many SEN families who have similar struggles to you.

With bedtime, what if rather than expecting her to lie down and go to sleep, you let her play with a couple of her dolls quietly in her bed? Let her have a little bedside light with low, warm lighting, so the room is mostly dark, but just enough to play sat in bed. Maybe that would remove the pressure to stop her body and brain and go to sleep now, but hopefully the quiet play, cosy bed, soft lighting would let her naturally wind down towards sleep? And hopefully in her bed, in the near-dark would be something your husband could accept as sufficiently close to what he thinks bedtime ought to look like, so he'd be willing to do it the same way.

My two have little clip-on reading lights with adjustable brightness, and one of them has a lovely almost amber light setting – very warm and cosy for falling asleep with, almost like candlelight.

OP, I just want to say your DD sounds just like my DD, who is 9.
It’s a very difficult place to be and brings a lot of confusion, so I fully empathise, I too have 2 older children who are completely different, I’ve blamed myself, I’ve googled hours into the night and felt I have failed in some way, but I know deep down I haven’t.
Our DD is currently awaiting diagnosis. Amongst the difficulties we face together, my DD is a kind, empathetic and lovely girl. The only thing that really helps is being calm and understanding, which of course isn’t always easy.
We’ve sadly received no support from the school (state) to support her, we’ve also battled school anxiety for well over a year, which has also impacted my mental health to a degree, I’m currently deciding whether to home-school, private school is out of our means, otherwise it would have been an option for us.

Finally picked up phone to GP - they've fobbed me off and said referral needs to go through school.

We've literally just moved her school as we felt that the one she was attending was a huge stressor for her and she's now somewhere smaller and less chaotic.

They said they would have the health visitor contact me so I guess I will wait for that and then just see how it goes with this new school.

I said I was concerned that I'd asked for help in her previous school and said I suspected neurodivergence but because they weren't seeing much at school and she was masking that they wouldn't be able to do a referral.

When will the system change for women and girls? It's so disheartening.

Have you spoken to the SENCO at the new school?

No not yet. I guess I wanted to see if a change of school might help, I did mention when we were being shown round the school the reasons for my wanting to find a smaller more nurturing school but didn't go into too much detail. Is it worth writing an email to the SENCO just so it's on their radar or maybe just see how things go and mention to their teacher at first opportunity?

I would speak to the class teacher and request a meeting with the SENCO.

Not much help here but a lot of what you’re saying sounds very similar to my DS (who masks very well) at the same age. He was diagnosed with ASD at 8 after a very uphill battle indeed - school “didn’t see it” (how convenient, means they don’t have to support if they can't see the need). You won't get an ADHD diagnosis without evidence from more than one setting but she can be diagnosed with ASD if that's what it is.

My DS was also in a class with children with visibly higher levels of need which means his subtle and complex presentation has gone unnoticed and we are still battling for support.

Keep going, you’re doing the right thing.

We went privately about a year ago. I recognise we were hugely privileged to be able to do this. We now have diagnoses of DCD and ASD but more importantly, a much better understanding of his needs. The OT assessment was particularly helpful. NHS speech and language wouldn’t even see him.

If it helps - things got better for us once we both got broadly on the same page (which really means once my DH got his head round the fact that there was something underlying). And things got easier from 7/8 onwards. Year 1 was particularly difficult, Year 2 a bit easier. The demands increase a lot in Year 1 and I think it isn’t unusual for children to struggle to cope, especially if there is something underlying.

@lollydu I just had to double check to see if I had written this post. This is exactly my situation but DD is 8. Literally everything you have said is our life down to the late ADHD diagnosis and special interest it dolls.

We are really struggling at the moment and are at complete crisis point. School are really supportive but I have absolutely no idea how they can help her as her behavior is school is brilliant.

If you want to PM feel free and I can talk you through some of the things we have tried.

I would say with the sleeping melatonin has been a game changer as she does now go to sleep at a reasonable time but we do still have frequent night waking.

I just realised you haven't had a diagnosis. I suspected ADhD with DD due to family history which we were on the waiting list for. But DD has been diagnosed with ASD (we had to go private). I literally can't tell you how uncanny your post is even the dummy obsession is the same.

Somewhat of a small update, we've moved school now and have found the SENCO at the new school to be far more supportive and generally the attitude of the new school a world away from where we were. Which is ironic as the school we were at was a school with a specialist autism unit. So the SENCO basically gave me a totally different response, I suppose because they probably recognise that moving schools is probably a drastic step for us so there must be some concerns. She basically said the waiting list is so long that they will support and refer anyone with concerns because what they don't want to happen is to be here 3 years later still with the same concerns and looking at only getting an assessment towards the end of primary school/early secondary, if the waiting times were shorter they would be able to wait and see comfortably sometimes but with the situation as it is, it's simply not possible to do that. So I have the referral form I just haven't done anything with it yet, I suppose because I'm waiting to see if a new school settles things for her. We're still having a lot of issues with her being totally inflexible and emotionally volatile and the sleep still isn't great but her general spirit seems better and anxiety seems to have settled a bit at the new school. She seems genuinely happier there.

With regard to the dummies she is not just obsessed with having them, she is obsessed with making dummies for her dolls out of anything she can find. She will find a piece of tinfoil on the floor and make a dummy out of it and get upset when it won't stay in the dolls mouth, she will sellotape them onto their faces, she will draw on paper and sellotape them. Even though I've bought a massive job lot of magnetic dummies for her reborns on eBay! We have even brought her magnetic paper and little magnetic pins as she loves to draw Dollie's, draw their dummies and pin them to their faces with a magnet. She's highly creative and loves to craft and draw all sorts of things, she will make things out of things she finds all over the house but often gets really frustrated when things don't work out the way she thinks they should in her head eg she will make something for a doll and when it doesn't stay in their hand or falls apart she gets very angry and upset.

So I'm just seeing how things go at the moment, we are still struggling but feel that moving schools was definitely the right decision. So I would definitely say if you're being told the same as I was at her previous school (no chance of being referred) it's definitely the schools stance, not the way it has to be as we've had a totally different message from her new school and genuinely feel if we are to go ahead with assessment etc we would be fully supported by them.